After many tries, Connecticut is getting a state-sponsored Health Information Exchange (HIE).
At their best, HIEs allow providers who are treating the same person to share information, reduce duplicated tests, and keep us safer. I’ve been a strong supporter of a Connecticut HIE that allows providers treating us to see our records. But not this one and not this way.
If you haven’t heard about Connecticut’s HIE, you aren’t alone. An obscure planning group has been working on it for over a year with very little public notice. Your providers will all be required under state law to put your medical records into their system. This includes all medications, diagnoses, family planning, sexually transmitted diseases, mental health, substance abuse treatment, and your doctor’s notes about you. If you’ve survived cancer or another high-cost health problem, it will be in the system. If you’re at risk of other high-cost health problems, even if you are monitoring and taking care of yourself, it will be in there.
They’ve created a nonprofit to run the HIE, with over $50 million in tax dollars to start. The HIE’s Board meets evenings in a conference room in Farmington. The Board includes insurers and large health systems, or Accountable Care Organizations (ACOs), that make more money if they reduce your healthcare costs. When the original seed money runs out, they intend to sell your data to those insurers and ACOs so they can see all your medical records, wherever you get your care. HIE officials dismiss concerns that insurers and ACOs will use the data to deny people healthcare or dump expensive patients, but that has happened in other states.
HIE leaders still haven’t decided if we will have the right to control who sees our own medical records. They want to wait until everyone’s records are already in the system to make that decision, but that’s far too late. Getting this wrong risks embarrassment, employment discrimination, and messing up what is now working in healthcare. Getting this wrong jeopardizes the adoption of exciting new innovations to improve health and the immense potential of data to improve population health. Getting this wrong could keep people from accessing needed care – harming lives and raising costs.
They could choose an opt-in model, requiring that they get our permission before our records are in the system, giving consumers the most control over our sensitive information. Or they could choose an opt-out system, so our records are in until we choose to remove them. But that requires that we even know about the HIE that our records are being shared. The state has a terrible history using this model to mislead people about another system that pays ACOs more to lower our costs of care.
The third option is “passive consent,” a model I’d never heard of until it was proposed by one of the HIE’s many consultants in an obscure online meeting. Under this model, if you choose to get care from a provider that participates in the HIE, then it’s assumed you’ve agreed to share your records. Because state law requires that every Connecticut provider participate in the HIE, consumers who want to protect themselves would have no choice.
This may all be unnecessary. Over 70% of Connecticut hospitals and 57% of doctors are now getting clinical information from other health systems, well above national averages. Connecticut has at least four functioning HIEs that securely share data now, created and run without any tax dollars. This includes CT Health Link, created in 2017 by the CT State Medical Society, connecting doctors across the state to improve our health without selling our data. It is unclear how the new state HIE will add anything of value to improve our health.
But if another HIE is that important to state residents’ health, the state should find a way to fund it without selling our data. The HIE is expected to cost $10 million yearly after we run out of federal money. If HIE leaders could learn to do without their army of consultants, they could bring that price tag down. But even so, $10 million is 0.05% of the state General Fund. Last fiscal year, Connecticut taxpayers spent more promoting tourism and developing mastery exams for fourth, sixth, and eighth graders.
People are understandably nervous about large entities selling our private data. The news is full of corporations selling our data without our consent or knowledge. The most recent breach of private information about applicants by Access Health CT is a reminder that nothing is perfectly secure. New artificial intelligence algorithms using our health data can unintentionally discriminate against underserved populations and make health disparities worse. Bills have been proposed in Connecticut requiring that we be notified when we enter a store that uses facial recognition to sell us products.
Proponents of the HIE are making big promises about improved healthcare quality and lower costs. Electronic health records (EHRs) were supposed to do both but have failed miserably. Despite 10 years of effort and spending billions, EHRs waste 5.9 hours of providers’ average workday, there is no evidence of improved quality, and there is good evidence that they increase medical errors. Between 85% and 99% of EHR system “alerts” are false alarms causing overwhelmed providers to ignore them all. One EHR vender paid $155 million to settle a lawsuit over false claims and kickbacks to providers. Paper records weren’t perfect but the persistent and costly problems with EHRs should give pause implementing an HIE to connect those EHRs.
Proponents of the HIE are rushing to get providers signed up and get our medical records into the system before a federal grant opportunity runs out. They plan to figure out later how to pay for it and if we can choose to keep our records out. But it will be too late. Trust in healthcare is low and dropping. Trust in state policymakers is even worse. Rushing to draw down federal tax dollars for a project Connecticut may not need while ignoring people’s privacy rights is not worth it.
Ellen Andrews, PhD, is the executive director of the CT Health Policy Project. Follow her on Twitter @CTHealthNotes.
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